The Social Security Rules Force Us Into a Risky Gamble on SSI

I fell in love with my husband, staff at the local Alcohol and Drug Clinic, immediately.

A self-described Native American-slash-hillbilly raised in the foothills of the Appalachian mountains racing cars and handling snakes, he'd swept me off his feet with his wicked sense of humor, giant heart, and practice of helping others often anonymously.

With a voice like Johnny Cash (and accent even thicker), we laughed at our inability to communicate through our respective pandemic bandana-and-mask. (I'd yet to discover he was half-deaf, courtesy of a teenage friend firing a shotgun by his left ear as a lark.)

A childhood chess champion, at 13 I'd begun teaching chess in New York City schools continuing through adulthood until the pandemic shut them down. Forced from New York City for the first time, I was 39, living out of a suitcase on a donkey farm at an artist residency in a tiny town in the rural South wondering what was next.

My husband and I met at the local AA meeting. Six months of friendship led to our first date at the popsicle shop where, 57 years old and as scared of falling in love as I was, he said shakily I was "purty as a new penny and cool as a fan."

Two months later: Pregnant, engaged (at the popsicle shop), living in a fairy-tale cabin.

My family, surprised I'd finally fallen in love and started a family, loved him too. My mother unexpectedly fell ill soon after but got to see me happy and settled before dying.

My husband is the best man I know. He's also a former felon. He makes good on his time out by helping others daily. But the prison system rarely lets you go. Criminal debt justice, complex PTSD, and physical disability are often invisible parts of our daily existence in paradise.

This isn't an unusual story (as evidenced by Hunter Biden's highly publicized recent criminal conviction), just stigmatized and rarely shared: The Center for American Progress finds "roughly 1 in 3 U.S. adults—have an incarceration, conviction, or arrest record," one in five for drug offenses—and over 46 million Americans have a substance use disorder, only 6 percent of whom received treatment.

With approximately 107,941 Americans dying from drug overdose in 2022 (according to the National Center for Health Statistics' latest research) and a federal budget for drug control of $35 billion in 2020, we can't afford to stay silent any longer.

I've personally been sober for almost five years. Answering for what I've done while living in addiction has been a difficult but important experience.

My choices today are wildly different as I become a better version of myself, or as my husband likes to say when lecturing at the clinic, the people we could have become had addiction not robbed us of it.

Born into addiction, he was given alcohol in the hospital to prevent him from going into withdrawal.

He grew up fast: By second grade, he was drinking beers and taking pills while caring for his sibling and mother, an addict who self-medicated her trauma and mental illnesses, while his father worked constantly to support them.

During his wilder hell-raising days, he became paralyzed from the neck down for six months. Untreated strep became pneumonia which went septic while being denied medical treatment in a jail cell after a Southern brawl. Losing half a lung and developing interspinous myelitis, he had a 50-50 chance of walking again.

My husband spent his time doing what he does best, working with others. He learned to walk again visiting the terminally-ill chronic ward and making them laugh, sneaking out to bum smokes.

The police paroled him, absolving themselves of financial responsibility. After dedicated free care, the hospital had to release him back onto the streets half-paralyzed.

His doctors pressed bags of food and clothes into his hands urging him to apply for SSI's disability payments.

"I can't afford to." He'd replied.

SSI is a federal assistance program that started providing monthly cash payments in 1974 to aged, blind, and disabled individuals with limited income and resources, like my family.

Of people who apply, 43 percent are accepted—and a disproportionate amount of recipients are African American and Latino, according to Social Security Administration data.

NPR cites a congressional budget report finding "some 10,000 people die every year" waiting to get on SSI or Social Security Disability Insurance (SSDI). My husband was almost one.

With a strong work ethic and accustomed to grueling physical labor, he tried working. Lacking my familial support system, he starved instead, sleeping under bridges and freezing in utility sheds when shelters had their disability section filled up or charged.

This time still haunts him.

He finally insisted his parole officer send him to prison where he'd be guaranteed a place to sleep, threatening to commit a crime if she refused. Many homeless people commit crimes for this reason.

It ultimately took nine years before my husband was able to apply for the SSI disability payments his doctors had recommended.

SSI's application process takes eight months. For us, it was roughly 14. Because we were together, finally he could afford to wait. Kind, overworked caseworkers, other recipients, and lawyers warned almost everyone gets turned down their first time applying.

To our surprise, he was found physically eligible for benefits immediately. But because we were married, he couldn't take them.

Averaging payments of $638/month, single recipients can have up to $2,000 in all accounts, married recipients $3,000. Social security counts assets and income. Understanding the difference is confusing.

Married couples are allowed $3,000 in the bank account (income) but a car (asset) counts as $1,000, lowering that limit to $2,000. Limits have remained largely unchanged since 1985.

The 15-year-old car was a cherished surprise resulting from volunteer work my husband had done, gifted by people who wanted to see him succeed. Finally, he could get his driver's license back, a punishingly difficult process for offenders affecting their ability to work.

Our rural area has the second highest hospital closure rate in the country, per the Tennessee Hospital Association, and ambulances travel far to arrive. Before my mother died, my parents, worried about us living in a remote, wooded area with a baby and one car, bought us a second vehicle as a wedding gift.

Debt-free, cars counted as $1,000 monthly. Caseworkers advised us to sell one and get another, this time with debt.

This was nothing compared to the guaranteed income he could provide our family, assured Medicaid, and the mental relief of a safety net. We sold it.

I'd been searching for work (our situation demanded it be remote and flexible) for a year and a half. I found it—paying $1,400 over SSI's limit. At best, it lasted indefinitely. At worst, 30 days.

My husband's pain is constant, with good and bad days. It's impossible to know which is going to show up when or for how long. His condition is progressive and could quickly worsen. Some things he can do. Sometimes he can't work at the clinic for months.

I'd heard enough stories of SSI to be nervous. A friend's mother who wishes to remain anonymous received a small inheritance, followed the caseworker's often conflicting instructions, only to lose her benefits and be presented with a bill.

NPR found many similar cases and quoted Kathleen Romig, Social Security Administration's current policy expert, who reported people below the poverty level still lose their SSI benefits: "...an average of 70,000 beneficiaries have their benefits suspended every year ...40,000 have their benefits terminated."

One in 6 SSI recipients got an overpayment notice last year, often incorrectly, almost impossible to counter, with payment demanded within 20 days.

For my husband, eligibility was the holy grail. For me, it was a constant bar of how far we'd ever be allowed to climb.

I couldn't set aside money for taxes—necessary for all freelancers—because it counted as income. SSI recipients can't save. NPR quotes Romig: "The low asset limit...penalizes people when they try to save.

"We know that saving is good...yet we're prohibiting some of the poorest, most vulnerable people from doing just that."

A white able-bodied woman raised in a first-generation middle-class New York City home, attending private school, Ivy-league college, and obtaining an MFA, I was privileged to have spent most of my life without government assistance.

None of this kept me from needing it.

I took the job, triggering my husband into memories of homelessness, hunger, and instability. I tried to reassure him, restating my financial commitment with a postnuptial agreement: He'd never be in that position again. If I could help it.

After two months, my salary was cut to $2,500. With our new car we'd gone into debt for, we were $500 over SSI's limit.

Torn between accepting a pay cut and returning to SSI, we're gambling I'll make enough to justify turning SSI down. My parents rose from poverty. Will I bring us back there?

NPR points out that in 1974, disabled people rarely worked. Fortunately, that's changed today. But social security hasn't: After earnings of $65, recipients see their benefits reduced by $1 for every $2 they make.

Under the currently stalled SSI Savings Penalty Elimination Act, Congress (historically imposing budget cuts on the program,) would raise limits: $10,000 for individuals, $20,000 for married couples, adjusting annually for inflation. This would be life-changing for thousands, including us.

NPR's investigation finds SSI "deeply in need of modernization" and "a forgotten safety net that keeps many of its recipients stuck in poverty...with a substantial "marriage penalty"."

The article wrote that Sen. Bill Cassidy, Louisiana Republican and co-author of the currently stalled mixed-party SSI elimination bill, "worried that the current asset limit keeps people from trying to work."

It does.

My husband's chosen to remain anonymous because he's "seen from the inside how corrupt things can be and doesn't want to endanger his family or new life" but wants to share that after he left prison, he was offered the choice between rehab, or the streets and a handful of pain med prescriptions.

It's extremely difficult for felons to find work. They encounter situations making their recovery harder to overcome and see lost wages of over $372 billion annually. These numbers affect black and brown individuals at an even higher rate.

The Bureau of Justice Assistance finds that "within one year of release, 43 percent of formerly incarcerated people were rearrested."

My husband arrived at Buffalo Valley rehab in his prison shirt. They took him in and kept him there when funding ran out.

Over the years, he's become staff. I say it's due to his extraordinary journey, work ethic, and character; he insists it's all been a team effort and he couldn't have done it on his own, reminding me of Buffalo Valley's motto: People Helping People Themselves.

Help is everywhere today, flowing both to and from us, the people at the clinic, our wonderful landladies, his doctors, my family, those who didn't make it, and strangers we might never meet.

When I ask why he's never bitter about anything, he says it's because he had to go through what he did to get here and to me and the baby. He's grateful for it, and to have the opportunity to give back to others daily.

For both of us, here is a pretty wonderful place to be.

He dreams of opening a woman's halfway house—women have a fraction of the resources available to men—in memory of his mother.

Sari Caine is a writer who lives off-the-grid with her family in the Appalachian woods. They build giant bird houses together and grow lots of food. She's currently writing a YA novel about a neurodivergent teen girl who, while fighting for acceptance in her school's all-male chess team, accidentally becomes an international champion.

All views expressed are the author's own.

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